This thesis in the field of microdata analysis aims to introduce dose optimizing algorithms for the pharmacological management of Parkinson’s disease (PD). PD is a neurodegenerative disease that mostly affects the motor functions of the patients and it is characterized as a movement disorder. The core symptoms of PD are: bradykinesia, postural instability, rigidity, and tremor. There is no cure for PD and the use of levodopa to manage the core symptoms is considered the gold standard. However, long term use of levodopa causes reduced medication efficacy, and side effects, such as dyskinesia, which can also be attributed to overmedication. When that happens precise individualized dosing schedules are required. The goal of this thesis is to examine if algorithmic methods can be used to find dosing schedules that treat PD symptoms and minimize manifestation of side effects. Data from three different sources were used for that purpose: data from a clinical study in Uppsala University hospital in 2015, patient admission chart data from Uppsala University hospital during 2011-2015, and data from a clinical study in Gothenburg University during 2016-2017. The data were used to develop the methods and evaluate the performance of the proposed algorithms.The first algorithm that was developed was a sensor-based method that derives objective measurements (ratings) of PD motor states. The construction of the sensor index was based on subjective ratings of patients’ motor functions made by three movement disorder experts. This sensor-based method was used when deriving algorithmic dosing schedules. Afterwards, a method that uses medication information and ratings of the patients’ motor states to fit individual patient models was developed. This method uses mathematical optimization to individualize specific parameters of dose-effects models for levodopa intake, through minimizing the distance between motor state ratings and dose-effect curves. Finally, two different dose optimization algorithms were developed and evaluated, that had as input the individual patient models. The first algorithm was specific to continuous infusion of levodopa treatment, where the patient’s state was set to a specific target value and the algorithm made dosing adjustments to keep that patients motor functions on that state. The second algorithm concerned oral administration of microtables of levodopa. The ambition with this algorithm was that the suggested doses would find the right balance between treating the core symptoms of PD and, at the same time, minimizing the side effects of long term levodopa use, mainly dyskinesia. Motor state ratings for this study were obtained through the sensor index. Both algorithms followed a principle of deriving a morning dose and a maintenance dose for the patients, with maintenance dose being an infusion rate for the first algorithm, and oral administration doses at specific time points for the second algorithm.The results showed that the sensor-based index had good test-retest reliability, sensitivity to levodopa treatment, and ability to make predictions in unseen parts of the dataset. The dosing algorithm for continuous infusion of levodopa had a good ability to suggest an optimal infusion rating for the patients, but consistently suggested lower morning dose than what the treating personnel prescribed. The dosing algorithm for oral administration of levodopa showed great agreement with the treating personnel’s prescriptions, both in terms of morning and maintenance dose. Moreover, when evaluating the oral medication algorithm, it was clear that the sensor index ratings could be used for building patient specific models.

Introdução: A síndrome da dor patelofemoral (SDP) é definida como queixa dolorosa na região anterior do joelho, mais comumente na face medial da patela. Teoriza-se que o déficit de força dos músculos estabilizadores do quadril e do controle dinâmico do membro inferior esteja relacionado com o desenvolvimento da SDP. Objetivos: O objetivo primário foi comparar o ângulo de projeção no plano frontal (APPF) do joelho e a força isométrica dos músculos do quadril e tronco em indivíduos com e sem SDP. O objetivo secundário foi analisar a correlação do APPF com a força dos músculos do quadril e tronco. Métodos: A amostra foi composta por 43 mulheres, divididas em dois grupos: Dor Patelofemoral (GDP, n = 22) e Controle (GC, n = 21). A força dos músculos abdutores, rotadores laterais e extensores do quadril e flexão lateral de tronco (Core lateral) foram avaliados com um dinamômetro isométrico. A avaliação da força foi bilateral para calcular o Índice de Simetria entre os Membros (ISM). O complexo póstero-lateral do quadril foi calculado pela soma dos três grupos musculares do quadril divido por três. O APPF foi avaliado com uma câmera digital durante step down em três desfechos: a) Inicial: antes de iniciar o movimento; b) Final: ao final do movimento de step down; e c) Final-Inicial: diferença entre os ângulos inicial e final. Para análise do APPF foi utilizado o Software de Avaliação Postural (SAPo). Resultados: O GDP apresentou APPF Final e Final-Inicial 5,2º maior que o GC. Em relação à força dos músculos do quadril, foi constatado um déficit no GDP em comparação ao controle para os abdutores (10,4 ± 3,3 vs 12,7 ± 2,7, P = 0,02), extensores (14,2 ± 7,1 vs 18,9 ± 5,9, P = 0,02), rotadores laterais (11,6 ± 3,1 vs 13,5 ± 2,4, P = 0,03) e complexo póstero-lateral (12,1 ± 3,8 vs 15,1 ± 2,8, P = 0,01) do quadril. O GDP apresentou maior assimetria entre os membros em relação à força dos músculos do quadril e tronco. A assimetria entre os membros variou entre 13,1 a 22,6% no GDP e 1,8 a 3,3% no GC (P < 0,05). No GDP, a força dos músculos rotadores laterais e do complexo póstero-lateral do quadril apresentou boa correlação negativa com o APPF Final-Inicial (r = -0,4). No GC, o APPF Final e Final-Inicial apresentaram boa correlação negativa com o índice de simetria dos músculos abdutores, força dos rotadores laterais e do complexo póstero-lateral do quadril (r > -0,4). Além disso, no APPF Final-Inicial foi encontrada correlação negativa com a força dos músculos abdutores (r = -0,42). Conclusão: Os dados indicam que mulheres com dor patelofemoral apresentam maior APPF do joelho, déficit de força dos abdutores, rotadores laterais, extensores e do complexo póstero-lateral do quadril e assimetria dos músculos do quadril e tronco. O déficit de força, principalmente dos rotadores laterais e do complexo póstero-lateral do quadril, está associado com o aumento do APPF do joelho / Introduction: The Patellofemoral Pain Syndrome (PFPS) is characterized by anterior knee pain, most commonly in the medial patellar facet. Reduced hip-stabilizers strength and dynamic control of lower limb might be related to the development of the PFPS. Objectives: The primary objective was to compare the Frontal Plane Projection Angle (FPPA) of the knee and hip and trunk strength in women with and without PFPS. The secondary objective was to analyze the relationship between FPPA with hip and trunk strength. Methods: The sample consisted of 43 women divided into two groups: Patellofemoral Group (PFG, n = 22) e Control Group (CG, n = 21). Muscle strength for hip-abduction, hip- extension, hip external- rotation extensors and lateral trunk-flexion (Core lateral) were measured bilaterally using a handheld dynamometer. The limb symmetry index (LSI) was calculated for all subjects. Hip posterolateral complex was calculated as the sum of the three hip muscles assessed divided by three. The FPPA was recorded by a digital camera during step down in three outcomes: a) Initial: before starting the movement; b) Final: in the end of the step down; and c) Final-Initial: difference between the final and initial angles. For FPPA analysis was used the Postural Assessment Software (PAS/SAPo). Results: FPPA Final and Final-Initial for the PFG reveal 5.2º greater than the CG (P < .05). Regarding the hip muscle strength, women with PFPS demonstrated deficit compared to the control group for hip abduction (10.4 ± 3.3 vs 12.7 ± 2.7, P = .02), hip extension (14.2 ± 7.1 vs 18.9 ± 5.9, P = .02), hip external rotation (11.6 ± 3.1 vs 13.5 ± 2.4, P = .03) and hip posterolateral complex (12.1 ± 3.8 vs 15.1 ± 2.8, P = .01). LSI values in women with PFPS were significantly worse than the control group. The hip and trunk asymmetry ranged from 13.1 to 22.6% in the PFG and 1.8 to 3.3% in the CG (P < .05). In the PFG, the hip-abduction and hip posterolateral complex strength showed moderate negative correlation with FPPA Final-Initial (r = -.4). In the CG, the LSI hip-abduction, hip-abduction and hip posterolateral complex strength showed moderate negative correlation with FPPA Final e Final-Initial (r > -.4). In addition, the hip-abduction strength deficit was associated with increased FPPA Final-Initial (r = -.42). Conclusion: The results indicate that women with patellofemoral pain demonstrate increased FPPA of the knee, weakness in hip-abduction, hip- extension, hip external- rotation, extensors and hip posterolateral complex. Women with patellofemoral showed most asymmetry of the hip and trunk muscle strength. The hip weakness, mainly hip external- rotation and posterolateral complex, is associated with increased FPPA of the knee

The Patient-Centred Assessment of Symptoms and Activities (P-CASA) is a new idiographic, open-ended assessment that examines each individual patient’s symptoms within the context of his or her daily life. P-CASA asks patients for their most important activities, what interferes with these activities, and any coping strategies. This thesis presents the rationale and design of P-CASA and its first validation study. Sixty patients at the Pain and Symptom Management/Palliative Care Clinic of the BC Cancer Agency (Vancouver Island Centre) completed P-CASA and the Edmonton Symptom Assessment System (ESAS), which is the current nomothetic assessment at the Clinic. The results demonstrated that P-CASA was not redundant with ESAS because it assessed (a) information about patients’ activities and coping strategies, which the ESAS does not; (b) all relevant cancer-related symptoms (not just pain or a fixed list); (c) co-occurring symptoms; (d) more specific details and different priorities about symptoms than in their ESAS. / Graduate

Este estudo avaliou o potencial da Telemedicina como suporte complementar a assistência ambulatorial na monitoração de sintomas em pacientes com câncer avançado. Foram acompanhados 12 pacientes do ambulatório do Núcleo de Cuidados Paliativos do Hospital Universitário Pedro Ernesto (NCP-HUPE) de janeiro de 2011 a agosto de 2013. Mensalmente foram feitas consultas ambulatoriais pela médica e equipe multidisciplinar. Neste intervalo, os pacientes do domicilio, através de seus computadores pessoais se conectaram ao Laboratório de TeleSSaúde UERJ pelo serviço de webconferências interagindo com a mesma médica assistente do ambulatório. Os pacientes também tiveram acesso à médica por celular e email. A cada entrevista (presencial e remota) foi aplicada a Escala de Avaliação de Sintomas de Edmonton [Edmonton Symptom Assessment System (ESAS)], e coletado outros dados quanto a outras queixas biopsicossociais e espirituais, agravos à saúde, qualidade de áudio e vídeo da conexão, avaliação dos familiares com a Telemedicina e interferência da Telemedicina quanto ao local do óbito do paciente. Houve dificuldade na seleção dos pacientes, pois o HUPE é um hospital público cuja população assistida tem, caracteristicamente, baixa escolaridade, nível socioeconômico restrito e pouca habilidade com informática. O tempo médio de acompanhamento foi de 195 dias (DP 175,11; range: 11-553 dias). Todos receberam diagnóstico de câncer avançado e tinham dificuldades com locomoção. Sem dúvidas, a ESAS favoreceu a comunicação dos sintomas com os profissionais de saúde; porém, condições clínicas e controle dos sintomas singulares, avaliados em momentos distintos e sujeitos a influências diversas, impedem conclusões em relação às pretensas vantagens. Acompanhamento clínico, detecção de agravos à saúde e de sintomas físicos, psicossociais e espirituais foram possíveis de ser observados pela Telemedicina, confirmados e medicados nas consultas presenciais. A conexão para webconferência foi estabelecida por familiares, pois nenhum paciente operava computadores. O óbito domiciliar ocorreu em 41,67% e todos, mesmo os óbitos hospitalares, receberam suporte à distância do NCP. Durante o estudo foram feitos 305 contatos: 110 consultas presenciais a pacientes e familiares e 195 por Telemedicina (77 webconferências, 38 telefonemas e 80 emails). Todos os familiares referiram satisfação com o suporte oferecido. A Telemedicina permitiu maior acesso ao sistema de saúde (maior número de contatos), reduziu a busca por serviços de emergência, ajudou o controle dos sintomas e proporcionou orientações e segurança aos familiares. Este suporte favoreceu intervenções precoces e proativas e assistência continuada até o óbito. A Telemedicina demonstrou ser um bom adjuvante na monitoração e gerenciamento de sintomas de pacientes em cuidados paliativos em domicílio, não substituindo, mas complementando a assistência presencial. / This study assessed telemedicine potential as a complementary support to ambulatory care in monitoring symptoms in patients with advanced cancer. Twelve patients were followed up at the Palliative Care Nucleus ambulatory of the Pedro Ernesto University Hospital (NCP-HUPE) from January 2011 to August 2013. Monthly, assistance were made by physician and multidisciplinary team. Meanwhile, patients at home, with their personal computer connected to UERJ Telehealth Laboratory webconference service, interacting with the same ambulatory physician. Patients also had access to doctors cellphone and e-mail. At each interview (personal and remote) was applied the Edmonton Symptom Assessment System (ESAS), collected data on other biopsychosocial and spiritual complaints, health problems, audio and video quality connection, family's evaluation about Telemedicine and Telemedicine interference on patient's place of death. There was difficulty to select patients because HUPE is a public hospital whose population assisted has typically low educational and socioeconomic status, and restricted ability to deal with computers. The mean follow-up time was 195 days (SD 175.11; range: 11-553 days). All were diagnosed with advanced cancer and had transportation difficulties. There is no doubt that ESAS favored symptoms communication with health professionals; however, singular clinical conditions and symptom control assessed at different moments and subjected to many factors, preclude conclusions regarding alleged advantages. Clinical monitoring, detection of health problems and physical, psychosocial and spiritual symptoms were possible to be observed by Telemedicine, and were confirmed and treated at face-to-face consultations. Webconference connection was made by family members, because no patient operated computers. Death at home occurred in 41.67% and everyone, even the hospital deaths, received NCP support at distance. During the study was made 305 contacts; 110 face-to-face consultations to patients and families and 195 by Telemedicine (77 webconference, 38 telephone calls and 80 emails). Telemedicine allowed better access to health system (greater number of contacts), reduced search for emergency services, helped symptom control and provided orientations and reassurance to family members. This support favored early and proactive interventions and continuing assistance till death. Telemedicine has proved to be a good adjuvant in home monitoring and managing symptoms in palliative care patients, complementing face-to-face assistance, but not substituting it.

Este estudo avaliou o potencial da Telemedicina como suporte complementar a assistência ambulatorial na monitoração de sintomas em pacientes com câncer avançado. Foram acompanhados 12 pacientes do ambulatório do Núcleo de Cuidados Paliativos do Hospital Universitário Pedro Ernesto (NCP-HUPE) de janeiro de 2011 a agosto de 2013. Mensalmente foram feitas consultas ambulatoriais pela médica e equipe multidisciplinar. Neste intervalo, os pacientes do domicilio, através de seus computadores pessoais se conectaram ao Laboratório de TeleSSaúde UERJ pelo serviço de webconferências interagindo com a mesma médica assistente do ambulatório. Os pacientes também tiveram acesso à médica por celular e email. A cada entrevista (presencial e remota) foi aplicada a Escala de Avaliação de Sintomas de Edmonton [Edmonton Symptom Assessment System (ESAS)], e coletado outros dados quanto a outras queixas biopsicossociais e espirituais, agravos à saúde, qualidade de áudio e vídeo da conexão, avaliação dos familiares com a Telemedicina e interferência da Telemedicina quanto ao local do óbito do paciente. Houve dificuldade na seleção dos pacientes, pois o HUPE é um hospital público cuja população assistida tem, caracteristicamente, baixa escolaridade, nível socioeconômico restrito e pouca habilidade com informática. O tempo médio de acompanhamento foi de 195 dias (DP 175,11; range: 11-553 dias). Todos receberam diagnóstico de câncer avançado e tinham dificuldades com locomoção. Sem dúvidas, a ESAS favoreceu a comunicação dos sintomas com os profissionais de saúde; porém, condições clínicas e controle dos sintomas singulares, avaliados em momentos distintos e sujeitos a influências diversas, impedem conclusões em relação às pretensas vantagens. Acompanhamento clínico, detecção de agravos à saúde e de sintomas físicos, psicossociais e espirituais foram possíveis de ser observados pela Telemedicina, confirmados e medicados nas consultas presenciais. A conexão para webconferência foi estabelecida por familiares, pois nenhum paciente operava computadores. O óbito domiciliar ocorreu em 41,67% e todos, mesmo os óbitos hospitalares, receberam suporte à distância do NCP. Durante o estudo foram feitos 305 contatos: 110 consultas presenciais a pacientes e familiares e 195 por Telemedicina (77 webconferências, 38 telefonemas e 80 emails). Todos os familiares referiram satisfação com o suporte oferecido. A Telemedicina permitiu maior acesso ao sistema de saúde (maior número de contatos), reduziu a busca por serviços de emergência, ajudou o controle dos sintomas e proporcionou orientações e segurança aos familiares. Este suporte favoreceu intervenções precoces e proativas e assistência continuada até o óbito. A Telemedicina demonstrou ser um bom adjuvante na monitoração e gerenciamento de sintomas de pacientes em cuidados paliativos em domicílio, não substituindo, mas complementando a assistência presencial. / This study assessed telemedicine potential as a complementary support to ambulatory care in monitoring symptoms in patients with advanced cancer. Twelve patients were followed up at the Palliative Care Nucleus ambulatory of the Pedro Ernesto University Hospital (NCP-HUPE) from January 2011 to August 2013. Monthly, assistance were made by physician and multidisciplinary team. Meanwhile, patients at home, with their personal computer connected to UERJ Telehealth Laboratory webconference service, interacting with the same ambulatory physician. Patients also had access to doctors cellphone and e-mail. At each interview (personal and remote) was applied the Edmonton Symptom Assessment System (ESAS), collected data on other biopsychosocial and spiritual complaints, health problems, audio and video quality connection, family's evaluation about Telemedicine and Telemedicine interference on patient's place of death. There was difficulty to select patients because HUPE is a public hospital whose population assisted has typically low educational and socioeconomic status, and restricted ability to deal with computers. The mean follow-up time was 195 days (SD 175.11; range: 11-553 days). All were diagnosed with advanced cancer and had transportation difficulties. There is no doubt that ESAS favored symptoms communication with health professionals; however, singular clinical conditions and symptom control assessed at different moments and subjected to many factors, preclude conclusions regarding alleged advantages. Clinical monitoring, detection of health problems and physical, psychosocial and spiritual symptoms were possible to be observed by Telemedicine, and were confirmed and treated at face-to-face consultations. Webconference connection was made by family members, because no patient operated computers. Death at home occurred in 41.67% and everyone, even the hospital deaths, received NCP support at distance. During the study was made 305 contacts; 110 face-to-face consultations to patients and families and 195 by Telemedicine (77 webconference, 38 telephone calls and 80 emails). Telemedicine allowed better access to health system (greater number of contacts), reduced search for emergency services, helped symptom control and provided orientations and reassurance to family members. This support favored early and proactive interventions and continuing assistance till death. Telemedicine has proved to be a good adjuvant in home monitoring and managing symptoms in palliative care patients, complementing face-to-face assistance, but not substituting it.

Introdução: A síndrome da dor patelofemoral (SDP) é definida como queixa dolorosa na região anterior do joelho, mais comumente na face medial da patela. Teoriza-se que o déficit de força dos músculos estabilizadores do quadril e do controle dinâmico do membro inferior esteja relacionado com o desenvolvimento da SDP. Objetivos: O objetivo primário foi comparar o ângulo de projeção no plano frontal (APPF) do joelho e a força isométrica dos músculos do quadril e tronco em indivíduos com e sem SDP. O objetivo secundário foi analisar a correlação do APPF com a força dos músculos do quadril e tronco. Métodos: A amostra foi composta por 43 mulheres, divididas em dois grupos: Dor Patelofemoral (GDP, n = 22) e Controle (GC, n = 21). A força dos músculos abdutores, rotadores laterais e extensores do quadril e flexão lateral de tronco (Core lateral) foram avaliados com um dinamômetro isométrico. A avaliação da força foi bilateral para calcular o Índice de Simetria entre os Membros (ISM). O complexo póstero-lateral do quadril foi calculado pela soma dos três grupos musculares do quadril divido por três. O APPF foi avaliado com uma câmera digital durante step down em três desfechos: a) Inicial: antes de iniciar o movimento; b) Final: ao final do movimento de step down; e c) Final-Inicial: diferença entre os ângulos inicial e final. Para análise do APPF foi utilizado o Software de Avaliação Postural (SAPo). Resultados: O GDP apresentou APPF Final e Final-Inicial 5,2º maior que o GC. Em relação à força dos músculos do quadril, foi constatado um déficit no GDP em comparação ao controle para os abdutores (10,4 ± 3,3 vs 12,7 ± 2,7, P = 0,02), extensores (14,2 ± 7,1 vs 18,9 ± 5,9, P = 0,02), rotadores laterais (11,6 ± 3,1 vs 13,5 ± 2,4, P = 0,03) e complexo póstero-lateral (12,1 ± 3,8 vs 15,1 ± 2,8, P = 0,01) do quadril. O GDP apresentou maior assimetria entre os membros em relação à força dos músculos do quadril e tronco. A assimetria entre os membros variou entre 13,1 a 22,6% no GDP e 1,8 a 3,3% no GC (P < 0,05). No GDP, a força dos músculos rotadores laterais e do complexo póstero-lateral do quadril apresentou boa correlação negativa com o APPF Final-Inicial (r = -0,4). No GC, o APPF Final e Final-Inicial apresentaram boa correlação negativa com o índice de simetria dos músculos abdutores, força dos rotadores laterais e do complexo póstero-lateral do quadril (r > -0,4). Além disso, no APPF Final-Inicial foi encontrada correlação negativa com a força dos músculos abdutores (r = -0,42). Conclusão: Os dados indicam que mulheres com dor patelofemoral apresentam maior APPF do joelho, déficit de força dos abdutores, rotadores laterais, extensores e do complexo póstero-lateral do quadril e assimetria dos músculos do quadril e tronco. O déficit de força, principalmente dos rotadores laterais e do complexo póstero-lateral do quadril, está associado com o aumento do APPF do joelho / Introduction: The Patellofemoral Pain Syndrome (PFPS) is characterized by anterior knee pain, most commonly in the medial patellar facet. Reduced hip-stabilizers strength and dynamic control of lower limb might be related to the development of the PFPS. Objectives: The primary objective was to compare the Frontal Plane Projection Angle (FPPA) of the knee and hip and trunk strength in women with and without PFPS. The secondary objective was to analyze the relationship between FPPA with hip and trunk strength. Methods: The sample consisted of 43 women divided into two groups: Patellofemoral Group (PFG, n = 22) e Control Group (CG, n = 21). Muscle strength for hip-abduction, hip- extension, hip external- rotation extensors and lateral trunk-flexion (Core lateral) were measured bilaterally using a handheld dynamometer. The limb symmetry index (LSI) was calculated for all subjects. Hip posterolateral complex was calculated as the sum of the three hip muscles assessed divided by three. The FPPA was recorded by a digital camera during step down in three outcomes: a) Initial: before starting the movement; b) Final: in the end of the step down; and c) Final-Initial: difference between the final and initial angles. For FPPA analysis was used the Postural Assessment Software (PAS/SAPo). Results: FPPA Final and Final-Initial for the PFG reveal 5.2º greater than the CG (P < .05). Regarding the hip muscle strength, women with PFPS demonstrated deficit compared to the control group for hip abduction (10.4 ± 3.3 vs 12.7 ± 2.7, P = .02), hip extension (14.2 ± 7.1 vs 18.9 ± 5.9, P = .02), hip external rotation (11.6 ± 3.1 vs 13.5 ± 2.4, P = .03) and hip posterolateral complex (12.1 ± 3.8 vs 15.1 ± 2.8, P = .01). LSI values in women with PFPS were significantly worse than the control group. The hip and trunk asymmetry ranged from 13.1 to 22.6% in the PFG and 1.8 to 3.3% in the CG (P < .05). In the PFG, the hip-abduction and hip posterolateral complex strength showed moderate negative correlation with FPPA Final-Initial (r = -.4). In the CG, the LSI hip-abduction, hip-abduction and hip posterolateral complex strength showed moderate negative correlation with FPPA Final e Final-Initial (r > -.4). In addition, the hip-abduction strength deficit was associated with increased FPPA Final-Initial (r = -.42). Conclusion: The results indicate that women with patellofemoral pain demonstrate increased FPPA of the knee, weakness in hip-abduction, hip- extension, hip external- rotation, extensors and hip posterolateral complex. Women with patellofemoral showed most asymmetry of the hip and trunk muscle strength. The hip weakness, mainly hip external- rotation and posterolateral complex, is associated with increased FPPA of the knee

Chronic obstructive pulmonary disease (COPD) is a major health problem in the United States. Acute exacerbations of COPD are primarily responsible for the physical, psychological and economic burden of this disease. Early identification and treatment of exacerbations is important to improve patient and healthcare outcomes. Little is known about how patients with COPD recognize an impending exacerbation and subsequently decide to seek treatment. The purpose of this qualitative descriptive study was to explore and describe symptom recognition and treatment delay in individuals experiencing an acute exacerbation of chronic obstructive pulmonary disease (COPD). Leventhal’s Common Sense Model of illness representation undergirded this study. Using semi-structured interviews, adults hospitalized with an acute exacerbation of COPD were asked to describe their symptom experience and self care behaviors, including treatment seeking, in the days to weeks prior to hospitalization. Data analysis revealed one main theme: Recognizing, responding and reacting to change, and six subthemes: Something’s coming, Here we go again, Seeking urgent treatment, Riding it out, Not in charge anymore and My last day that richly described the COPD exacerbation experience. The study revealed that patients experience an illness prodrome prior to exacerbation and have a recurrent exacerbation symptom pattern that was self-recognized. Treatment seeking was most influenced by the speed and acuity of exacerbation onset, severity of breathlessness, fears of death, nature of patient-provider relationship and the perception of stigmatization during prior healthcare encounters. These findings are important for the development of interventions to improve patient recognition and management of COPD exacerbations in the future.

No description available.

This thesis consists of four research papers presenting a microdata analysis approach to assess and evaluate the Parkinson’s disease (PD) motor symptoms using smartphone-based systems. PD is a progressive neurological disorder that is characterized by motor symptoms. It is a complex disease that requires continuous monitoring and multidimensional symptom analysis. Both patients’ perception regarding common symptom and their motor function need to be related to the repeated and time-stamped assessment; with this, the full extent of patient’s condition could be revealed. The smartphone enables and facilitates the remote, long-term and repeated assessment of PD symptoms. Two types of collected data from smartphone were used, one during a three year, and another during one-day clinical study. The data were collected from series of tests consisting of tapping and spiral motor tests. During the second time scale data collection, along smartphone-based measurements patients were video recorded while performing standardized motor tasks according to Unified Parkinson’s disease rating scales (UPDRS). At first, the objective of this thesis was to elaborate the state of the art, sensor systems, and measures that were used to detect, assess and quantify the four cardinal and dyskinetic motor symptoms. This was done through a review study. The review showed that smartphones as the new generation of sensing devices are preferred since they are considered as part of patients’ daily accessories, they are available and they include high-resolution activity data. Smartphones can capture important measures such as forces, acceleration and radial displacements that are useful for assessing PD motor symptoms. Through the obtained insights from the review study, the second objective of this thesis was to investigate whether a combination of tapping and spiral drawing tests could be useful to quantify dexterity in PD. More specifically, the aim was to develop data-driven methods to quantify and characterize dexterity in PD. The results from this study showed that tapping and spiral drawing tests that were collected by smartphone can detect movements reasonably well related to under- and over-medication. The thesis continued by developing an Approximate Entropy (ApEn)-based method, which aimed to measure the amount of temporal irregularity during spiral drawing tests. One of the disabilities associated with PD is the impaired ability to accurately time movements. The increase in timing variability among patients when compared to healthy subjects, suggests that the Basal Ganglia (BG) has a role in interval timing. ApEn method was used to measure temporal irregularity score (TIS) which could significantly differentiate the healthy subjects and patients at different stages of the disease. This method was compared to two other methods which were used to measure the overall drawing impairment and shakiness. TIS had better reliability and responsiveness compared to the other methods. However, in contrast to other methods, the mean scores of the ApEn-based method improved significantly during a 3-year clinical study, indicating a possible impact of pathological BG oscillations in temporal control during spiral drawing tasks. In addition, due to the data collection scheme, the study was limited to have no gold standard for validating the TIS. However, the study continued to further investigate the findings using another screen resolution, new dataset, new patient groups, and for shorter term measurements. The new dataset included the clinical assessments of patients while they performed tests according to UPDRS. The results of this study confirmed the findings in the previous study. Further investigation when assessing the correlation of TIS to clinical ratings showed the amount of temporal irregularity present in the spiral drawing cannot be detected during clinical assessment since TIS is an upper limb high frequency-based measure.

This thesis explored symptom clusters in patients with lung cancer before, during and after oncological treatment. A literature review and an interview study was used to explore the symptom cluster experience from the patients’ perspective. A large diversity of symptom cluster constellations were identified, in which fatigue was the most commonly occurring symptom, followed by dyspnea, pain, depression, cough and nutritional impact symptoms. Many symptom assessment instruments were identified, measuring mostly the intensity-dimension alone or in combination with timing. The results also stress that living with symptom clusters during treatment is more about survival than actually living. Patients’ symptom management strategies were shaped by impacting conditions such as knowledge and earlier experience of symptoms. Symptoms were often regarded as unavoidable by the patients and something to accept. How symptoms were recognized by health care professionals further added to the normalization of symptom clusters. Subsequently, patients would not always ask for support, and their quality of life was negatively affected. Holistic person-centered care including multi-dimensional symptom assessment is considered essential to ensure adequate symptom cluster management for patients with lung cancer.